For those who are self diagnosed

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Thank you for asking a question that got that out of me and on to a page. I feel better.

What made you decide to research AS?

I spent a few years scouring forums online to try and discover the source of my social difficulties. I ended up on social anxiety forums, anxiety forums and depression forums until I eventually wound up here. I never really felt like I fit the mould when I was a member of the other forums. I was always making posts trying to explain what I was going through and seeing if anyone could relate and most of the time the replies were very limited. I was always making posts saying things like "I'm not that anxious, I'm just simply socially inept. I have nothing to say" etc etc.
Then it occurred during a meeting with my doctor. I knew of aspergers and autism disorders but never really considering that I could actually have it. I came home from the doctors surgery and did a bit of reading on aspergers and I was so so shocked. I sat there staring at the screen in a state of paralysis like "That's me. That's me down to a tee".

How much research did you do on AS?

Quite a bit. One of my special interests is pharmaceuticals, psychology and psychiatry. So it was much like reading up on those areas. I was just so shocked how much I related to a lot of the symptoms. Even little things that I did which I thought was normal were symptoms. I discovered I stim a lot and I finally discovered why I'm such a clumsy clutz and why I never learnt to ride a bike etc etc.

Did you also research other things that could cause your symptoms?

Yes. Depression, Social Anxiety Disorder, Psychosis, Generalised Anxiety Disorder etc. I found that although I have symptoms of a few of those disorders (except psychosis) they did not fully explain lack of social skills.

How many of the symptoms do you have? A lot, a few?

I'd say I have a lot of the symptoms of AS. But all my symptoms are very mild. I stim, have troubles with maintaining relationships due to poor social skills, have special interests, often take things literally, don't get some jokes, have special interests etc. I pretty much fit the bill but on a very mild end of the spectrum.

How much do you trust your own dx?

I am also a hypochondriac! I have imagined myself having a lot of things wrong with me (usually physical illness). But since I read up on AS I just couldn't quite believe that there was something out there that pretty much matched all my symptoms.
I also got referred by a psychiatrist for an aspergers assessment. I got to the final stage of the interviews and at that point me and the woman assessing me were basically in concurrence that I had AS but she just needed to do a final interview with my parents. I never let the interview take place.

Do others agree with your asssessment?

Not many people know atall that I consider myself someone with AS. I'd say 3 of my close friends know. When I told them they were basically like "it explains a lot". So I'd say they agree yes.

What's keeping you from getting a formal dx?

In order for me to get a formal diagnosis they have to interview my parents. I don't want my parents to know. I like my privacy a lot and I just wouldn't want them to know about it. I find when people know you have a diagnosis they start treating you differently or think they can analyse your moods and your personality. They then start to relate everything you do to your diagnosis. I don't want that to happen to me.
I also don't want to be constrained by a formal diagnosis. As much as I probably could use a bit of support that the diagnosis would guarantee I just don't want to know in my mind that I really really do have it. Because then I think I may start to limit myself and what I can do.

so yeah. C'est moi.

What made you decide to research AS?
The first time I researched it, was after I'd watched an episode of CSI which involved an autistic man. I was curious about it so I researched autism and ended up reading about aspergers, too. The first thing I thought was "Wow, this sounds like me.", but I attributed it to "medical students' disease".

The second time was after watching the show criminal minds and reading about the characters. I read that fans think Reid might have aspergers, so I researched it again and still thought it fit me.

How much research did you do on AS?
I don't remember specifically, but I consider my research to be quite thorough. I'm sure if I were to add up all the hours I spent researching it, the amount would add up to multiple weeks worth.

Did you also research other things that could cause your symptoms?
Of course. It would be illogical to stick to one explanation and ignore any other possible explanations. I've always had a strong interest in anything to do with the mind so it came naturally.

How many of the symptoms do you have? A lot, a few?
A lot. I don't point them out specifically to people, because I feel if I do truly have it, I don't need to point out every little symptom to prove it. To people with knowledge of aspergers, they see the symptoms in me just fine. Though I do enjoy reading the reports my psychiatrists write up and see specifically what they point out. It's very interesting.

How much do you trust your own dx? I ask this because about 15 years ago I was a huge hypochondriac. I was afraid I had so many different things and then I'd read about them and think I had the symptoms. I got over that, luckily, because it's scary. I'd be afraid to trust my own dx of something like AS.
I don't trust my own dx at all. I know I could easily be biased or it could be "medical students' disease". Which is why even though I suspect I have it, I won't believe I have it for sure until I have a formal diagnosis. It comforts me to know that multiple psychiatrists have given referrals for me to go for a proper diagnosis. Not to mention my psychiatrist that has a special interest in aspergers thinks I definitely have it. Comforting, but it does not negate my need for a formal diagnosis.

Do others agree with your assessment?
A counsellor and a therapist both do not think I have it. The therapist actually has a son with aspergers, but her impression of me was fundamentally flawed because she failed to listen to what I was saying and had poor interpretations of what she did listen to. She believed what she wanted to, and ignored anything that contradicted it. The counsellor was similarly ignorant.

Otherwise, my friends, family members, and as I previously mentioned, my psychiatrists, also think it fits me. But my mother agrees with me that a formal diagnosis is important.

What's keeping you from getting a formal dx?
Time. It takes forever to see psychiatrists to get referrals and whatnot. I live in an isolated area and they only come here a few times a year, and one of my appointments had to be cancelled and then I had to wait about 6 months for their next visit. I'm supposed to find out the date I can go for a formal diagnosis in june. Luckily, because of where I live, the wait for the formal diagnosis should be shorter than it would be for other people that live elsewhere.

What made you decide to research AS?
reading this site

How much research did you do on AS?
For several months I did very little except read this site, read books about it, watch YouTube videos about it, and read descriptions of it.

Did you also research other things that could cause your symptoms?
I wasn't searching for things that could cause symptoms. I was searching for other people who had sensory issues. It wasn't because I felt a need to connect with them. It was out of curiosity, wondering whether there was anyone else in the world who had such issues, because I had always had such issues and wondered why no one else seemed to. I hadn't considered that sensory processing disorder would be a disorder.

How many of the symptoms do you have? A lot, a few?
According to my own understanding of the DSM-IV-TR criteria, Gillberg's criteria, and the DSM-5 proposed criteria, I have enough to qualify. When I was younger I think I would have been a stereotypical "little professor". I have a very significant and unusual special interest which I have encyclopedic knowledge about and which I used to talk about incessantly(and still do, to a degree, but less because when I was in high school someone explained to me that doing so was annoying), sensory issues, and lack of social understanding(not even making attempts to interact in certain ways that I now understand to be common). When I was very young I taught myself how to read and was considered very gifted, but when I was put in gifted classes I was clearly very different from the students in said classes. My dad would get mad when I would do things wrong socially, not just for things like bad manners, but for saying things directly and bluntly.

How much do you trust your own dx? I ask this because about 15 years ago I was a huge hypochondriac. I was afraid I had so many different things and then I'd read about them and think I had the symptoms. I got over that, luckily, because it's scary. I'd be afraid to trust my own dx of something like AS.
In general I believe in the accuracy of my self-assessment, partially because of the way that I found out about AS. I wasn't searching for information about social interaction problems. The idea that I had trouble with social interaction was something I knew, but it wasn't something I cared about enough to research why. I was trying to find out if there was anyone who had specific sensory issues like mine, because I had never met anyone who seemed to. After reading this site, I found the diagnostic criteria for AS, and they seemed like a checklist which had been created specifically about me.

I wouldn't consider myself a hypochondriac.

Do others agree with your asssessment?
I asked my mom about each criterion, and she admitted that I fit each one well, but then mentioned autism and she said that that she didn't believe that I was. She is the only person I've told directly.

I remember in sixth grade, a teacher seemingly spontaneously addressed me at the end of a class and told me that she thought that I should watch a particular movie because she thought that it would be useful for me. This was about 15 years before I heard about AS. I didn't know it, but the movie was about an autistic person. Two co-workers have directly told me directly that I am autistic(not that they believe that I am, but that I am).

What's keeping you from getting a formal dx?
There are a few things:

1. I have both a lack of understanding of who to contact and what to ask and a learned fear of dealing with new people and new situations to ask.
2. I have a significant medical expenses because of a non-serious but annoying congenital medical issue that I have to pay for right now. I have known my whole life that I would have to eventually pay for them, but only within the past few years did I get a job and gain the ability to potentially do so. I have saved money since getting my job and still don't have enough yet.
3. I likely also have significant moving expenses coming up within the next year.

1. I don't really remember. I think it was when I was on a synesthesia forum (synesthesia is the crossing of 2 senses) and there was a topic about how synesthesia is common among people with aspergers. Then I googled aspergers and took a few quizzes.
2. I did a little research, like just enough to understand what it is. But I always learn new stuff on wrong planet.
3. Yes, but they don't seem to be the case.
4.a lot.
5.I trust my dx probably like 79-80 % (if 100 percent is completely sure)
6.I agree with it, cuz it explains my social akwardness and other symptoms.
7. Telling my family is keeping me from getting a formal dx.

I started researching AS when my mom told me that a friend of hers, who is a psychologist, suggested a potential AS diagnosis upon hearing about (but never meeting) me.
I have done extensive research on Asperger's, autism, PDD NOS, and various similar PDDs like Rett's and Heller's syndrome to such a degree that it has become my latest obsessive "special interest" (alongside Star Trek), and a significant enough amount of the information I've gathered has pointed to my having it, so I am almost certain of my diagnosis, because most of my identifying difficulties don't fit into any other category except perhaps high sensitivity.
Before I ever heard of AS, I did research on other neurological "outlier" conditions such as introversion and Elaine Aron's high sensitivity with as much fervor and enthusiasm as my current AS research, in order to find out what was "wrong" with me.
My mother agrees with my assessment, as she was the one who first brought the idea to my attention, but my dad, who doesn't like labels, is reluctant to accept the idea. They are the only ones who know about it.
The only thing currently keeping me from getting a proper diagnosis, is the fact that my current counselor doesn't like labels any more than my father, and so refused to test me. When I have the money, I'm going to go to a professional whose job is diagnosing PDD's and see what he thinks.

Back around the turn of the century (no, smartass, the 21st century), my sister read an article in a newsmagazine about what they semi-jokingly referred to as "geek syndrome". She put the magazine down, turned to our mother (who was living with her at the time), and said, "So that's what's wrong with Jon!"

After hearing this tale, I began what is for me fairly routine investigation - reading the books listed in the article (except the Atwood, because it was never in at the library), then moving on to the DSM-IV-TR, where I compared the AS listing to several other possible disorders, including schizophrenia and BPD. AS fit best - for instance, BPD subjects show flattened affect, but that's because they honestly aren't feeling the emotions, not because they don't know how to express them. I then showed a copy of the DSM-IV criteria to my wife, hinting that I was wondering if it might apply to anyone we knew; she read it and pegged me (and said the entry should be illustrated with my picture).

I'm fairly confident in the self-diagnosis - to date, nothing else has explained who I am as well as that. I haven't gotten a professional diagnosis because those cost money, and what with the associated problems with keeping a job, I tend not to have money. Currently, I'm hoping that our current situation (everyone else in this household is officially disabled) may persuade the state to extend medical coverage to me; should this happen, I can then seek official diagnosis, and if it's not AS, I can find out at least what it is.

I was looking at Social Anxiety on Wikipedia, and I didn't think it sounded much like myself; it just seemed like plain old 'shyness'- minus sensory issues, special interests, routines, eye contact etc. At the bottom of the Wiki page, it had other related pages and 'Asperger's Sydrome' was one of them.


I did A LOT of research- and still do; I have about 30 or more bookmarked pages on my browser under the heading 'AUTISM SPECTRUM DISORDERS'. I also have probably clicked on every link (hyperbole) or Youtube video on or related to Asperger's Sydrome, and have downloaded many autism related sample books on to my Amazon Kindle.


Yes, I too researched Social Anxiety, Personality Disorders and OCD...although, I believe it's possible I have co-morbid OCD with AS.


A lot; I'd say I fit about 75-80% of the Symptoms and have scored quite high on most related ASD tests that are available online.


I trust my diagnosis, however at times I do doubt myself, but that is natural for anyone to do so. Though, I am usually reassured when I hear of diagnosed Aspies that are very similar to myself and their stories, habits etc.


The friends that I've told agree with me, but my family do not due to their lack of understanding of Autism Spectrum Disorders. Also, my sister is circumscribed to the idea of every autistic being male and expressing extreme behaviors because she only knows of one person with autism.


What's keeping me from getting a formal diagnosis is that the people I have already been referred to have not gotten back to me and I have been on a long waiting list for about a year, waiting for an assessment. Plus, my GP doesn't seem to care and does not follow up on my requests.

Well, I could not actually have been dxd with Asperger's, since it was not recognized when I was a child. I actually believe I was dxd with Childhood schizophrenia, but my family tried to hide that. Which only means I am/was on the Spectrum..
Nowdays, I still exhibit a lot of Autistic behavior & traits. Even more when young. In fact, symptom wise I am Asperger's poster child. However, I was non-verbal for 2 years during my early childhood & my functioning socially matches mild/moderate classical autism.
I am in the process of getting an official *current* dx.
And I have read absolutely every book on Autism I can lay my hands on..

Sincerely,
Matthew

Looking back:

1) I had problems with "theory of mind" or perspective taking. There seemed to be a gross miss with social cues and, a lack in knowing the code of conduct, or a want, in the 'automatic gauging the intentions of others.' None here.

2) Along with this was the 'long time' spent on solitaire, one dimensional activities. These had a 'funny tune' about them, due to the consumption of time. One thing comes to mind, was getting up and going to school, coming home, and then biking to the arcade to play a particular pinball machine.....day after day, month after month..... like an addiction ---an addiction that pushed away everything in its wake. These interests change forms, as this goes from one thing to the next. This always struck me as unusual.

And, on a day to day basis, more or less, I have an unease around people, and it seems I've had to learn the how to's, as coping with communicating in these areas. I strongly sense a quality of unnaturalness about this by 'the way I cope,' or the fact that I even have to - totally unnatural.

In essence, the two points here are heavily ingrained.

BAP baby.

Edit: I looked at SPD first -- then found blogs about AS; seemed to fit. Found I'm ADHD -- but doesn't explain the above

Last edited by Mdyar on 05 Jun 2012, 4:43 pm, edited 1 time in total.

A friend with a PhD in Special Education asked recently if I had AS. During the course of our conversation, he asked this question three times. Was floored the first time he asked. By the third time, I was thinking, "Gee, maybe he's onto something." Told him I thought I might have been a little autistic when young but was diagnosed about 10 years ago with chronic PTSD (and so strove to overcome some PTSD manifestations, esp. hypervigilance).

Since that discussion, I've been scouring the 'net for info about AS. That's how I found WrongPlanet.net. Yesterday at the local public library, I picked up two books: "Living Well on the Spectrum" by Gaus and "Asperger Syndrome Employment Workbook" by Meyer.

Yes, PTSD.

Symptoms specific to AS, nearly every item mentioned in the list specific to females: http://www.help4aspergers.com/pb/wp_a58d4f6a/images/img244154ad237783e339.JPG.

When I was a youngster (between 10 and 13, or so), I was also a bit of a hypochondriac, mostly because I was hoping to die of a terminal disease so my family would finally fuss over me. We had this old medical book from the 1940s and I'd thumb through it looking for any disease that matched my symptoms. It was a beautiful book in terms of illustrations and black-and-white photographs (wonder where it ended up?) but I'm still here.

The only thing keeping me from getting a medical Dx is finding the right medical doctor/psychiatrist to do the Dx. My friend said he is willing to fund my counseling. Not sure if he is aware that AS does not have a cure but I would welcome learning some better social skills.

i'd have to say, my story's pretty similar to zombiegirl2010's,

except for the marriages and the proposals. and the sexuality thing. but mix and match works for me ... i.e.

>sic (not female, i can only guess badly at how that ended up, started, or progressed)



as for myself,



do others agree with my assessment ?

my parents know, my sister doesn't quite comprehend, neither does my dad, my stepbrother doesn't care, my mum is perhaps my one advocate, but i have no opinion either way. i've known about AS for years, but never had a formal diagnosis, because i don't quite have as many issues dealing with people at 33, as i did at 15. they're largely the same issues, but that's understandable too.

my aunt who lives in melbourne, who told me about it a few years ago, doesn't think i have AS, because i can speak, i can converse, and i can problem solve., i have aptitude and skills that are valued, if inappropriately (IT / technical support) and i can interpret emotional range and responses. i tell her it's taken practise, she thinks it's something else, it might be. but i'm flummoxed as to what else i have, if it is ASD, or HFA, or not.

In Australia. i don't quite know the formal or informal medical affect that declaration has on medical insurance. i just know what it ends up being, rather than the costs,

I.E. it's a few sessions of treatment with judgement based on conversations and assessible criteria. My diagnosis was lackluster, i went to a psychologist, who sat down with me, i paid about $350 or something arbitrary and high, we spoke in a room for 2 hours, did a paper test on depression and ADD, and ASD/depression because i mentioned difficulty with motivation and decision making, sleep problems, aboulia (lack of motivation or strong decision making). which is probably something else.

My mum, who was the impetus for this, wrote up a nice 4 page letter covering all my childhood symptoms, (which i have very little memory of (obviously)), but i also forget about a lot of primary and preschool too, which was handy, as it hit all the DSM IV traits they use to diagnose children with ASD and learning disorders.

Prevaricatedly, she either got fed up, or something clicked. i think she watched a TV documentary/news show with tony attwood (that QLD'er with the affinity for seashell spirals ) in it. Without her impetus to do the research or find places, i'd probably be right where i am now. oh ... i'd be different. yes. different. (Yes, not really different)

Then again, i'm pretty unimpressed with the psychology industry, i went to about 7 different clinicians of varying speciality, Aspergers never came up. Depression, SAD, ADD/ADHD, came up, my issues with choosing female avatars in MMOs came up as an interesting choice/topic for 40 minutes once (i sort of regret steering the conversation that way, because i was having trouble isolating an emotional incident from my memory. and its terrifically expensive to have a conversation about things you enjoy when having it preyed upon with an hourly rate)

i had to do the diagnosis first, i was seemingly the only one qualified enough to do it.

i did seek intervention when i could, i saw counsellors, specialists, psychologists, consultants, etc. i was unmotivated, uninterested, (or confusing), i had problems with vocab, speech errors, and linear recall, i could run rings around a problem i was comfortable with, but stymied at picking up the next intuitive linear section, math, was either pathetically easy or mystifying. that, still haunts my academic life.

i rejected professional diagnosis for the longest time, because i didn't know anyone like me, or that would converse like me. still don't. i'd given up on diagnosis for several years, and learned to live with the imprecations of my difficulties, I learned to fill in the blanks and find way around the problems i had, on my own terms, at my own pace.

While i was being assessed, i think i was diagnosing them at the same time, it felt like it was,

i'd tell them what they wanted to ask about (a device that i use to analyse their cogitation process and judge what people want to hear, not what's important),
they asked me what i felt when that happened, i drew a blank more often than not.

i had sleep problems, i had no idea what i wanted to do or work as, the 5 year gap or the 7 year gap, never interested me as a desirable conclusion. i only thought i'd have a million dollars, a nice house and work a few days a week doing something on my own schedule, that's not quite compatible with the 5 year model or the job market or the employment system in general.

ASD never came up when i prompted most psychologists, i started with me, my current situation, but then i moved to telling them up front i can be direct and honest, and i can lead and steer the conversation any which way they or i wanted, because i do that. i use conversation differently, and i work around, below and above, conversation. it's not in any way the vehicle you want to use to poke around in how i percieve things or explain them,

i've tried. and then i explain how that works, and then they take the reins, or let me lead them around.
and they nod and probably think i'm depressed and delusional. which is, arguably, highly likely, and also, quite pharmaceutically unhelpful so far.

and, much like


i also kept seeing examples that were so grossly out of character, that autism never fit.

i had a distant cousin who had severe autism, speech impairment and motor control deficits, (i haven't seen her in decades, but she's going well, i hear.) when i did hear about asperger's, and then read about it, without examples, i was pretty reactionary, i didn't fit into that mould, and i'd likely associated autism with my cousin, who i couldn't associate her in my memory, with my own cognition and the lack of comprehension of other people (and the rest, which requires observant, and communicative people, which is likely where the diagnosis chain falls short for ASD, we cope better with honest people, it's just that there's a lack of them.)

my trepidation came about because i could not find a relatable role model, character or characteristic, except in books, where fantasy had logic, where ideas had to be mapped out, and decisions had consequent actions and considered thought.

How do i compare to the DSM IV model ?

slightly. i don't know. when i read the DSM IV, i can't associate with the clinical sense of it. i wasn't all the time displaying the full gamut of symptoms, which i assume is the standard "you gotz a label" diagnosis that people assume is how it's diagnosed.

at some stages, i had meltdowns, dietary problems, stimming, speech, vocab, writing and socialising difficulties, but not all at the same time, that i noticed. it's likely i did, i just can't recall it.

when i was younger, Reading, i picked up quite quickly once i learned to associate words and phonemes instead of written characters (after all, auspicious , when spelled out, doesn't sound like the same word, to the chagrin of all spelling competitors), and i picked up what people call speed reading myself, which impressed my family at 5. As for Speech, not so much. i had speech therapy until my reading picked up and overtook my problems with construction of sentences. writing, not so much, i was considered ambidextrous, but equally awful at handwriting in both hands, so i spent a lot of time in libraries at recess, writing out those ABCs in cursive and block print, etc.

i prefer to use http://tvtropes.org/pmwiki/pmwiki.php/U ... erSyndrome because it has examples of behaviour and situations, which people can identify with, as well as the incorrect assumptions and myths. (it's handy as a crib sheet for other people, because of the examples.)